36, A Number Not To Be Envied, Unless It Is Your Bra Size

For those of you wondering "wha-happen?"(to quote Eliza), well 36 happened. As has been reported, Eliza is a less than stellar sleeper who lives by the credo "sleep is for the weak" (this is apparently related to her other life philosophy that "food is for the weak"). Up until August Eliza had achieved a total of 36 nights of uninterrupted sleep. Now admittedly some of the sleepless nights in the first 18 months that she was home from the NICU were brought on by the need to sleep feed her or by her middle of the night vomit routine brought on be her reflux. But the past several months her inability to sleep has worsened and worsened and in the past month Eliza has been averaging about 6 to 8 hours of sleep in a 24 hour period (naps included).

This is not good at all since Eliza should be getting about 12 hours a day sleep. As Eliza's sleep deteriorated so did her behavior and sensory issues (and so did my ability to post to the blog.) Eliza could not focus in any of her therapies and would go from 0 to 10 and then 10 to 0 in the blink of an eye. One would think that all of this awake time would have caused an eating binge, but alas, a veritable hunger strike set in. Eliza's volume intake seemed to mirror the sleep situation, with her daily volume of formula sinking to as low as 6 to 8 ounces. This is not good at all for a near 30 month old who eats no food (no, I do not consider consuming one demitasse sized spoon of pudding in a day to be "eating food").

So drastic times have called for drastic measures. After talking things over with Eliza's pediatrician and a few other wise souls, Eliza is starting a 3 week trial of a prescription medication to help her sleep. The first night there was no discernible difference and Eliza finally fell asleep after 11 pm,waking at 4:42 am. Night two was not so fun. Eliza was none too keen on the taste of the medication getting squirt into her mouth, even after it was diluted with water, and basically all hell broke loose. I even had to call in reinforcements (thank you Bonnie). I decided to give it one more try on night three and was rewarded with a peaceful sleeping baby for ten hours, which translated to a markedly happier and more engaged toddler the next day.

Eliza is now on her fourth night of the medication (I'm not counting the first two nights) and if all goes well we will have hit the magic number 40 for full nights of sleep for the wee one. Hopefully a few weeks of a sleep aid will get Eliza into some type of normal sleep pattern. Her formula intake has improved the past few days and she is back to taking 12 to 16 ounces of formula a day. Who knew a well rested toddler was a hungry toddler, although actually it would appear that by all accounts Eliza has no sense of hunger or doesn't recognize the sensation as hunger.

On a far happier note, I have discovered that Eliza loves a good carousel. Last summer she was a bit put off by the loud music but this time was so enthralled I had to pre-pay for a few rides since she didn't want to get off.

Feeding the goats and birds was fun, but not nearly as entertaining as the carousel!

Support Groups vs. Support Hose

Honestly folks I swear that I never thought I was the kind of person who would need a support group. I really figured I would need support hose long before a support group. But then the fates decided to mess with my grand plan and not only did I need xanax and crocheting, but darn if I didn't find myself looking up ever preemei support group in the tri-state area and on the internet. Much like Goldilocks, the first few support groups I tried just didn't fit me. People were either too pie-in-the-sky or too doom-and-gloom or just downright dopey.

How did I decide which support groups to stick with? Well I found that following the criteria below really helped me decide which groups were right for me:

1. No one in the group cringed or looked away when they saw a picture of Eliza just after she was born. (Unlike quite a few family members and friends...you know who you are and no I haven't quite forgetten yet).

2. Each new member of the group is congratulated on the birth of their babies no matter how serious their condition or how early their birth. (I had people ignore the fact that Eliza had been born and one person actually sent me a sympathy card).

3. I never have to decipher things like ROP, AOP, RDS, BPD, NEC, IVH, CP, PVL, CPAP, BiPAP, etc. to the group.

4. No one in the group will ever tell me that Eliza should "catch up by 2."

5. We can have an intelligent discussion on the pharmaceutical mechanisms and side effects of most respiratory and gastro-intestinal medications, a discussion that is probably as informed as any discussion between pharmaceutical reps.

6. Everyone in the group knows what Early Intervention is and no one will ever ask if it is a 12 step program for preemies.

7. For those of us who tried and failed to breast feed we are never made to feel like pariahs for giving our babies formula.

8. No one in the group will ever tell me that Eliza is just a picky eater or suggest that giving her Cheerios will cure her feeding problems.

9. We can communally celebrate our children's victories, which would otherwise go unnoticed in the rest of the world, like rolling over for the first time well after their first birthday or learning to hold a crayon or eating one lonely french fry or not vomiting for 10 whole days.

10. Being able to sometimes laugh along with the only people who understand at the otherwise dire situations we often find ourselves in.

So for those of you who think support groups are only for overly needy members of society, just remember that a bottle of xanax and pair of support hose can only get you so far.